What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Thursday, January 26, 2012

Dr Adrian Wiestner Speaking to Primary Care Providers about CLL

Many of you have seen this clip before.

I am reposting as it is the first in a series of interviews that when strung together should make the average primary care provider much more comfortable with the diagnosis and management of his or her CLL patient..

The reality is that many patients, especially CLL patients, who nearly always have enough time to learn about their disease before needing therapy are often more up to date on the latest than their primary care provider who may not see or recognize too many CLL patients.

I am trying to change that knowledge gap. This small pilot project will give you a sense of my other life in CME (continuing medical education) as a medical director. Primary Issues is the online journal for PCPs where I plan to publish these video snippets with the text and the questions to measure outcome that you see below.

I need your help first .

Tell me what you think works and what misses.

Tell me what I should be saying to your PCP.

Understand this clip is just the briefest opening to what is CLL. It is of course not the whole story. Drs Kipps, Pagel, and Wiestner will be talking more about diagnosis, symptoms, complications, treatment and the overall role of the local primary care provider in the patient's care.

I promise I won't post the same clip twice again, I just needed to start at the beginning.

Please email at bkoffmanmd@gmail.com or post your comment or suggestion. It will help me and may help others.

Because we are all in this together.

CLL Overview with Dr. Adrian Wiestner

PRE TEST QUESTION

Managing CLL is made difficult by the fact that:

1: It is the most rare of all adult chronic leukemia.

2: It usually presents in an aggressive fashion with B symptoms and white counts over 100,000 that need prompt attention.

3: It is nearly always asymptomatic, doesn’t progress, and any treatment other than reassurance should be avoided.

4: It may be very aggressive and symptomatic or it may be very indolent and asymptomatic.

Chronic Lymphocytic Leukemia or CLL is the most common adult leukemia in the United States, with approximately 15,000 new cases a year representing about 30% of all adult leukemia. The male to female ratio is 1.7: 1 and the average age at time of diagnosis is 70 years old, but it not unusual to find it in a 30 year old (Hernández JA, Land KJ, McKenna RW. Leukemias, myeloma, and other lymphoreticular neoplasms. Cancer 1995; 75:381). It is more common in Caucasians, and less common in Asia. These differences appear to be genetic as they persist when the ethnic population moves to America. Ashkenazi Jews may be at particularly higher risk (Leukemia. 1998 Oct;12(10):1612-7.Epidemiology and ethnic aspects of B cell chronic lymphocytic leukemia in Israel.Shvidel L, Shtarlid M, Klepfish A, Sigler E, Berrebi A).

What makes CLL so difficult for both doctor and patient alike is that about 25% of patients present with asymptomatic disease found incidentally on a routine blood count that may never need treatment, whereas up to 10% may present with rapidly climbing lymphocyte count and enlarging nodes associated with fevers, drenching night sweats, extreme fatigue and/or unexplained weight loss that demand immediate treatment. Others follow a course somewhere in between. CLL absolutely demands personalized care.

POST TEST QUESTION

Managing CLL is made difficult by the fact that:

1: It is the most rare of all adult chronic leukemia.

2: It usually presents in an aggressive fashion with B symptoms and white counts over 100,000 that need prompt attention.

3: It is nearly always asymptomatic, doesn’t progress, and any treatment other than reassurance should be avoided.

4: It may be very aggressive and symptomatic or it may be very indolent and asymptomatic. (CORRECT)

2 Comments:

Anonymous said...

I love that you're doing this. As you say, the relatively small population of CLL patients means that most primary care docs may be behind in their understanding of the disease.

I think your video and quiz are a good start. I'd immediately add info that says prognostic testing should be done so patients understand more about their individual status - most notably IgVH mutational status and FISH cytogenetics.

Post a Comment

About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.